Person-Centered Planning

On Friday, we had our regular quarterly meeting with Alex’s support team. Like IEP and case conference meetings held for students, the quarterly meetings allow us as parents to discuss Alex’s progress, gain input from the professionals who work with him, and make plans to keep him moving forward. Since Alex is doing well, especially considering that he has been able to have doses of three medications reduced successfully and one discontinued completely in the past year, we anticipated that the meeting would go smoothly. In addition, we are blessed to have fantastic support professionals who not only know how to bring out the best in Alex, but also celebrate with us the achievements he is making along the way.

The State of Indiana has recently begun person-centered planning with clients who have disabilities, so we knew this would be a primary focus of our meeting. Using a model called Life Course Tools (which is available online at lifecoursetools.com), the state has begun developing portfolios for “Charting the Life Course,” which is a lengthy process. Case managers are expected to discuss with individuals and their families eight life domains: daily life employment, community living, social and spirituality, healthy living, safety and security, citizenship and advocacy, supports for family, as well as supports and services. By asking various questions, the goal is to develop a plan for the future, a “life vision,” that allows a “full, inclusive, quality life in the community.”

Having read the materials online prior to our meeting, I was uncertain how Alex might answer these questions, especially since some of them seem rather abstract. However, he did amazingly well at providing the information needed to begin developing his plan for the future. With the reduction of medications, we have noted that Alex has been able to answer questions with less reliance on us to speak for him. He’s more alert and more decisive; moreover, his eye contact, volume, and speech have improved greatly. As he answered various questions, he looked at the person speaking to him, spoke up, and used complete sentences to convey clearly his ideas. His calm manner reflected his improved social skills, and his ability to express himself without asking us, “What would be good?” showed increased independence.

Noting his improved social skills, we explained that Alex is learning to use manners without constantly being reminded. When we asked him why that was important, he said that he didn’t want to be “rude” and then commented that not using manners is “disrespectful.” He displayed politeness by not interrupting others and by answering any questions asked of him, showing that he was paying attention and wanting to engage with other people. Moreover, he never complained that the meeting was taking too long, as he has at times in past meetings.

To gain insights into Alex’s priorities, his case manager asked him what kinds of things he enjoys. He listed "game shows, Walmart, Nanny’s house, and V.U." When asked for more specific details, he said that he likes The Price Is Right and Wheel of Fortune, shopping at Walmart because it’s a big store, going to his grandparents’ house because it’s “special,” and going to basketball games at Valparaiso University. His response came as no surprise to us, knowing what’s important to him. When asked what he likes to do, he said hiking at Coffee Creek (a nature preserve near our home) and going to concerts in the park. When he was asked what he’s good at, he immediately said math, and when asked about his ideal job, he said meteorologist. Some things never change; he has loved math since he was little and has told us for more than twenty years that he’d like to be a meteorologist someday. His love of numbers and weather has never waned over the years, and he clearly knows what he finds interesting. When we were asked what types of jobs we thought Alex might do someday, I mentioned that his computer skills, especially his excellent keyboarding skills, along with his attention to accuracy and details, might be used well in a job involving computer coding. His case manager seemed to think that could be a good match of his interests and abilities.

When discussing future living arrangements, his case manager asked Ed and me where we thought Alex would live “for the rest of his life”—at home with us, in a group home, or in supported living with a roommate and a caretaker in an apartment. A few years ago, we were told that Alex would likely live with us until we’re in our eighties because funding and housing for adults with disabilities is limited primarily to those with greater needs. We decided that we would make the best family life possible knowing that Alex will live with us for many years, and we are fortunate that he is quite pleasant 99.9% of the time. However, the “for the rest of his life” part of the question seems tricky.

While Ed and I confidently said, “I do” in our marriage vows with the stipulation “for as long as we both shall live” without hesitation, thinking about the rest of Alex’s life is different. For one, he is likely to outlive both of us, and we worry about who will care for him once we’re gone. In addition, autism has taught us to live one day at a time, one step at a time, one milestone at a time. Looking down the road too far can be overwhelming, thinking of all the skills to master and things to do, so we focus on accomplishing one thing at a time. Planning for the future is not the same with a child who has autism.

Moreover, I wondered how our response to the living arrangements inquiry reflects upon us as parents. If we want him to live at home with us, does that make us overly protective parents or simply caring ones? If we want him to be in a supported living arrangement with a caretaker, does that make us selfish parents or simply ones who want him to be independent? As the emotional mother, I responded that we thought Alex would probably live at home with us for a long time, and we are happy to have him here. As the rational father, Ed wisely added that we want Alex to be as independent as he can be and hoped that someday he might be able to live on his own. Knowing that is ultimately what’s best for Alex, especially since we may not always be able to care for him, I agreed with Ed.

Ironically, I thought the difficult part of person-centered planning would be getting answers out of Alex, but he had less trouble responding to the questions than I did. He has developed a clear sense of his likes and dislikes and strengths and weaknesses and has learned to express what he wants and needs. However, I over think things too much and should take a cue from Alex about just answering candidly. I’m sure this process of developing his Life Course plan will make me ponder many aspects of Alex’s life, and I hope I gain more insights along the way.

Apparently, his case manager was quite pleased with how well the meeting had gone, as she told us more than once how “easy” we had made things for her and remarked that we had given her quite a bit of good information to include in Alex’s portfolio. Moreover, she commented that she rarely sees “success stories” in her field, but that Alex has, indeed, been a success story with the progress he has made. Interestingly enough, Alex’s behavioral therapist used that same phrase recently, when she told me that she will be presenting Alex’s “success story” at her company’s annual meeting next month. To think that six years ago, we were overwhelmed as to how to help Alex overcome his extreme anxiety and aggression, and that now his team views him as a rare success story is truly a blessing. As we continue to look forward to Alex’s future, whether it be in the coming days, weeks, months, or even years, we thank God for the wonderful people He has sent to help Alex and for the prayers He has answered and will continue to answer to help Alex succeed.

“May He grant your heart’s desires and make all your plans succeed. May we shout for joy when we hear of your victory and raise a victory banner in the name of our God. May the Lord answer all your prayers.” Psalm 20:4-5

Facing the Future

 

Last week, I read two very sweet and uplifting Key Ministry blog entries written by mothers of children with Down Syndrome. While both essays express concerns for their children’s future, they also acknowledge the hope we have, knowing that God will provide for our needs. In “Worried About Your Child’s Future? Pray for Daily Bread,” Gillian Marchenko explains that people ask her if her special needs children will ever live on their own or if they will always live at home with her. [To read this essay, please click here.] She herself asks the question, “What will it be like to care for adults with disabilities as opposed to young children?”

As she considers this uncertainty about the future, she remembers the line from The Lord’s Prayer that her family recites daily: “Give us this day our daily bread.” She notes, “There is no way I can parent today without the daily strength God graciously gives…The only way to parent is day by day.” She concludes her essay, stating, “That’s how the future questions will resolve.”

Similarly, Ellen Stumbo addresses a major question parents of special needs children ask in her essay, “Will Our Daughter with Down Syndrome Live with Us Forever?” [To read this essay, please click here.] As she notes, “…who thinks about their child moving out on the day they’re born?” However, with the realization that her child’s life will be different, she candidly admits, “I was immediately wondering if she would ever live independently, if she would ever get married, if she would ever have a job.” Over time, she realizes, “I really, really enjoy my daughter.” Describing the sweet moments she and her husband share with this precious daughter, she comes to the conclusion: “So what if she lives with us forever?”

As the mother of a young adult with autism, I, too, have dealt with the concerns of taking care of an adult with special needs and wondered if and when he will be able to live on his own someday. In a little over a month, he will turn twenty-five, and people who don’t know our situation will ask if he still lives at home with us or lives in a group home for disabled adults. Even people who do know our situation will ask if and when he will move to a group home. Because of changes in how state funding is allocated for people with disabilities, he won’t be moving out anytime soon. However, Ed and I are perfectly fine with that. To borrow a line from Ellen Stumbo, we really, really enjoy our son.

To be truthful, I sometimes wonder how age will affect my ability to take care of Alex, performing the grooming tasks he cannot perform for himself. As I sit on the floor to clip his toenails, I’m thankful that I’m still limber enough at my age to sit cross-legged on the bathroom floor and lift myself up to standing position when I’m done. When I twist and turn my hand and head daily to make sure I have carefully shaved Alex’s face without any nicks or whiskers left behind, I’m thankful my hands are still nimble. As I help him get dressed every day, lifting his shirt onto the top of his head that towers nine inches over the top of my own head, I’m thankful that somehow God has given me the strength and energy to take care of my six-foot tall son. On those days I worry about how much longer I’ll be able to do these tasks for Alex, I watch Ed, who is ten years older than I am, perform similar caregiver tasks, and know that I don’t have to think about those things for at least ten more years.

When I am tempted to be overwhelmed by all the things I need to do for Alex or to fret about what lies ahead in our future, I have to remember to take things one day at a time, or, as Gillian Marchenko describes, “to parent day by day.” To calm myself, I often repeat aloud the scripture Philippians 4:13, which is posted on my refrigerator as a reminder: “I can do all things through Christ who strengthens me.”

Moreover, I often think about the worries of the past and realize that either they never came to pass or they resolved themselves over time. For example, Alex has pectus excavatum, a condition in which his breastbone dips down on his chest. When he was little, his pediatrician scared the daylights out of me, telling us that if it became worse, he could face a grueling surgery to fix the breastbone so that it didn’t press on his heart and lungs. Thankfully, that never came to pass, and the dip has become less pronounced over time. Nonetheless, I spent countless and useless hours worrying about a surgery we would not have to face.

Other concerns have taken care of themselves in time. For a long time, we wondered if Alex would ever be able to sleep through the night, but eventually we all were able to enjoy peaceful, uninterrupted sleep. Often when I awaken at my usual time in the morning, I thank God that Alex slept through the night, remembering the many nights he awakened and needed us to settle him back to sleep. For many years, we questioned if he’d ever be toilet trained, and eventually, he learned to use the bathroom independently and consistently. In fact, his main bathroom concern currently is that we always have enough toilet paper, and he gives us daily reports on how low the roll is running.

Perhaps the main question I have asked throughout the years has been, “Will our lives ever be normal?” After dealing with Alex’s developmental delays and anxiety and unpredictable behavior, we thought that we might never enjoy the peace and calm of “normal” life. However, because he has made such good progress, we are able to enjoy a more “normal” life than we thought possible, going to restaurants, concerts, and sporting events as a family. Last week during our quarterly meeting with Alex’s support team, as we told about the various activities he enjoys, his case manager remarked that Alex has more fun than anyone she knows. She’s right, and since he’s having fun, so are we.

As I look forward to the future, I don’t have all the answers. I don’t know when Alex will be able to live independently or how long he will live at home with us. At this point, Ed and I are delighted to have him home with us, enjoying the fruits of our labors to make him into the pleasant young man he has become. Moreover, we know that God has plans for him and trust that He will guide us in making any future decisions. Perhaps the greatest guide for handling the uncertainties of the future has been watching Alex, who doesn’t fret too much about his future, other than wondering how he can manage to fit in his schedule all the things he wants to do. In many ways, Alex is like the lilies of the field that Jesus describes in Matthew 6:28: “Consider the lilies of the field, how they grow; they toil not, neither do they spin.” Alex trusts that God and Ed and I will always take care of him, so he need not worry about the future. If he can be that faithful, so can I. Besides, we’re having too much fun right now and don’t need worry to spoil any of that.

“And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them.” Romans 8:28